Fondazione Telethon welcomes the EC’s initiative to create an enabling environment to accelerate the transition of biotech products from laboratory to the market. As the first charity holder of a marketing authorisation (MA) in the EU for a medicinal product targeting an ultra-rare disease, Fondazione Telethon suggests that the scope of this initiative is broadened also to non-profit entities engaged in the…
FT
Fondazione Telethon
NGO · Italy · EU Transparency Register 600735639422-31
1
position filed
in the 326 files tracked
1
legislative file
of 326 tracked
1
with a full position paper
attached to a submission
Counts here are a floor, never a total: they cover the 326 consultation files tracked so far (29,503 submissions, mostly 2025–26), so an organization's real filing history is larger, not smaller.
Who they are
Among the 784 non-governmental organisations on this site, they rank #608 by legislative files engaged — a count of participation, not a measure of influence.
0.4
declared lobbying FTE
self-declared
€25K+
declared costs / yr (floor)
0
EP accreditations
as declared to the register
2020
in the register since
Declares membership of
- Fondazione Telethon is member of:
- IRDiRC (https://irdirc.org/)
- ICPerMed (https://www.icpermed.eu/)
- ARM (https://alliancerm.org/)
- Treat-NMD (https://treat-nmd.org/)
- ENMC (https://www.enmc.org/)
Self-declared to the EU Transparency Register (snapshot 30 Aug 2026).
- Register category
- Non-governmental organisations
- Registered as
- Fondazione Telethon ETS (FTELE)
- Head office
- Roma, Italy
- EU office
- Milan
Self-declared to the EU Transparency Register (snapshot 30 Aug 2026); cost bands are floors, not audited totals. Reused under Commission Decision 2011/833/EU.
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Their record over time
Fondazione Telethon filed 1 position on 11 Jun 2025, across 1 of the 326 legislative files tracked here, attaching a full position paper 1 time.
What they argued
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Quotes are verbatim from submissions published by the European Commission, trimmed to their opening passage and never summarized by a model. Organizations only, never individuals. Reused under Commission Decision 2011/833/EU; the European Commission is not liable for this reuse.